Tuesday, September 4, 2018

You're never too young to get Bowel Cancer!

Did you know that bowel cancer is the second deadliest cancer in Australia! What the actual fuck! Australia has one of the highest rates of bowel cancer in the world; 1 in 13 Australians will develop the disease in their lifetime. 70% of people affected have no family history of the disease and no hereditary contribution.

The risk of developing bowel cancer rises sharply and progressively from the age of 50, but the number of Australians under 50 diagnosed with bowel cancer has been increasing steadily. That's why it is so important to know the symptoms of bowel cancer and have them checked out if they persist for more than two weeks.

Almost 90% of bowel cancer cases can be treated successfully when detected early.

This gorgeous lady is Alison, she teaches my kids singing and piano. When I first met her I thought she was a wonderful human being; still do. Sadly, she has had bowel cancer. Thankfully, she is still here....this is her story.

Hey Alison, tell us a bit about yourself?

I always find this question tricky, but my simple answer is; Hi, I’m Alison, I’m 27 and live in Sydney. I grew up in Canberra and moved to Sydney 6 years ago to study Musical Theatre.

Now I’m completing my Masters in Primary Teaching and work as a Music Teacher and children’s entertainer. Then people normally start asking questions and it’s not long before it heads into murky territory.

A normal conversation usually goes a little like this:
“What year are you in at uni?”
“Well I’m part time, I started full time then had to switch to part time for health reasons, so still got another year to go”
“Oh, that’s good. Do you still perform much?"
“Not at the moment, still just trying to manage my health and keep up with work and uni”
“So you’re still sick, but you look great”

And this is the point when I tell the full story. The up and down health battle of life with and after cancer.

When and how were you diagnosed with bowel cancer?

I was diagnosed with a Nuero Endocrine Carcinoid tumour when I was 25.

I still remember the day pretty clearly even though I was in complete shock at the time, but I’ll get back to that.

I’ve always had issues with my health. Throughout my teens I struggled with migraines and chronic fatigue syndrome, and then developed your typical food intolerances and IBS issues that no one could work out. So I switched to a gluten free, low fodmap diet, which seemed to work for a while.

Then 2015 happened. A year of major ups and downs health wise, I was constantly sick with repeated infections and viruses, had major migraine attacks and ended up in hospital, but no one could really figure out what was going on.

Towards the end of the year two new doctors came into the picture, a gynaecologist and an integrative doctor, and if I hadn’t found these two wonderful women, I probably wouldn’t be here now.

In January 2016, I had an exploratory laparoscopy where my gynaecologist was looking for Endometriosis, which she found, but she also noticed my appendix looked a bit odd. She showed the pictures to the surgeon in the next operating theatre who said it looked as though I’d had appendicitis, and my appendix should come out.

It wasn’t urgent, so I got through semester 1 of my master degree, and then had it removed, because what else does one do in their uni break but have their appendix removed. The operation went fine, I went back to Canberra so Mum could look after me as I recovered, headed back to Sydney 2 weeks later and went to my follow up appointment.

I went to that appointment feeling pretty good expecting to hear the operation went well and everything was fine, instead I heard the words “another operation…tumor…urgent scan…” and everything went a little blank. I didn’t even register that he’d said the word carcinoid (i.e cancer) until much later.

I left the appointment in shock and rang my mum, and I haven’t been to a specialist appointment alone since.

What was the treatment like? 

Two weeks after my diagnosis, I had a major operation, where they cut out half my large intestine, part of my small intestine, and all the lymph nodes and glands in the area.

What I didn’t realise at the time was that the particular tumour I had can only be removed through surgery. It doesn’t respond to chemo or radiation therapy, so it needs to be caught early enough and before it metastasizes, so it can be cut out.

I was extremely lucky! Also what we didn’t know at the time was the cancer had spread to my lymph nodes, which were thankfully all cut out, but my surgeon said I had more chance of winning the lottery than of the tumour being found in time….

How were your emotions as you went through this? 

My emotions, well it was a roller coaster, still is really. I think the best part was not realizing the severity of it all until it was over. I didn’t realise it was bowel cancer until a lovely nurse in the hospital said they’d never seen someone so young with bowel cancer before, and then the penny dropped.

After that I looked up the statistics and realised how lucky I was! But it was a very scary and emotional time. Thankfully I have an amazing support network who kept me going, but I wouldn’t have gotten through it all without my mum. She was there every day I was in hospital and comes to all the major appointments with me now, just in case.

How are you now? 

I’m still not great, and almost two years on I guess I thought I’d be feeling a lot better by now, but doctors tell me it’s all pretty normal. I still have severe gut issues which isn’t all that surprising seeing as I’ve lost half of it, I still get pretty run down and exhausted some times, my hair is still falling out, and I spend a lot of money on vitamins and medications which I’ll be on for the rest of my life.

The appointments, tests and managing medications gets pretty exhausting sometimes. I’ve had 2 operations already this year to remove polyps and cysts, and I’ll continue to have a colonoscopy every year for the next ten years and a scan every 12 months to monitor everything.

I’m on a gluten free, dairy free, low fodmap diet, and some days are good and some days are really bad. My motto has always been keep calm and carry on, but some days it’s really hard.

What would you tell people about bowel cancer? 

My main advice is to know your body and if something doesn’t feel right don’t stop searching for answers until you’re satisfied. If I’d just accepted IBS or gluten intolerance as a diagnosis I wouldn’t be here right now.

Trust your instincts, you know your body better than anyone! But also don’t forget Bowel Cancer or any cancer isn’t just an old persons disease, anyone can get it!

Anything else? 

Only that if anyone is going through something similar or wants more information go to the Bowel Cancer Australia website, they have a great team of nurses and a great peer-to-peer support network who regularly check in with me to see how I’m going.

I’m also happy to talk to people about my journey because the more everyone knows and understands, the better chance we have of detecting cancer early and saving lives.

Oh and also- If you’re over 50 and get sent the Bowel Cancer screening kit- please do it, it could save your life!

Do you talk about your bowels?

Have you known someone with bowel cancer?

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